Monday, July 15, 2013

In discussing AAC (augmentative
and alternative communication, in which a child uses something other than
speech to aid their communication---signs, boards, picture cards, apps,
devices) with parents, I am sometimes surprised by their lack of interest in
using it at home with their children who have complex communication needs. Obviously all parents want to communicate
with their children, so their resistance often comes from a well-intentioned
place . . . they feel like they understand their kids, and so inserting a
device (which can feel cumbersome and disconnecting) isn’t necessary. It might feel more personal to engage with a
child directly, through their speech and gestures, and parents feel like they
don’t need a device because they understand what their child is thinking.

It’s a (philosophically) dangerous assumption. One that all parents make at some point, and
all parents should abandon at some point.

Picture this:

(this picture is from the internet somewhere)

Maya, my 5 year old daughter who has severe speaking
challenges, and I are playing outside after school. A yellow school bus drives
by and she jumps up, points at the bus, looks from the bus to me and yells “Bus!”
(She’s a big bus lover, and “bus” is a very clear word for her.) She has wide,
excited eyes and a smile. I know she’s thinking Wow, I love that bus! and so I reply “Yes, a bus! I know you’re
excited to see the bus!”

Except here’s the problem---I don’t actually know
what she’s thinking. I get the gist (something enthusiastic about a bus) and I assume the details (I love that bus). This is a
big problem, a common trap that parents (and other adults)
fall into with communicationally complicated children. The I-know-what-she’s-thinking mindset
solidifies slowly, out of necessity, and initially develops for all parents with
their babies/toddlers. When children
start to communicate, they do it through whining, crying, pointing,
crawling/walking to objects (often times dragging a parent behind them), making
sounds, signing, etc. We caregivers become adept at interpreting this
intent-filled mash-up. Eventually, speech comes and the child can more clearly
express their thoughts . . . except when speech doesn’t come . . . and then
parents get additional practice at translating sounds and approximations, or
gestures, or even sometimes just a child’s eyegaze---a glance that lingers on a
cabinet, then flicks to their parent’s eyes, then returns to the cabinet.

We predict what our children are “saying”, and, with the
youngest of children, we probably get it right pretty often. (After all, if a
toddler points to the cookie cabinet and says “ti-ti” they probably want to eat
a cookie, not to discuss cookie theory or bake a batch of cookies or conduct a
brand comparison or analyze cookie shapes. Probably.)

But as a child with limited speech gets older, a somewhat
loaded situation develops when we continue to make assumptions about their speech. If
we assume that in a particular situation (eg. Maya sees a bus driving by) a certain sound/word/sign/gesture (“Bus!”
said with excitement) always means more
or less the same thing (I like the
bus! I love buses!)then we begin
to pigeonhole our child’s communication, and to (inadvertently,
unintentionally) sell them short. If
my reply to Maya in the bus situation is always something along the lines of “You
love buses!” or “I saw that bus!” then I am a) making a simplistic assumption
about what she was thinking, and b) replying in a predictable, kind of boring
way that doesn’t expose her to any new ideas.
Both of these points---the assumption about her thoughts and the reply
that I chose---have unfortunate consequences.

First, the assumption of her thoughts stinks, because I am
assuming that she is thinking more or less the simplest thing that I can glean
from her communication (one word (bus)
+ excitement = I like that bus). Whether
this is accurate or not, I am selling her short by not stretching my mind to allow
for the fact that she could be trying to say other (more interesting, novel,
creative) things about the bus.

Second, my reply stinks, because my low expectations of what
she was trying to say have now lowered the quality of my response. What if she
was trying to say “That bus is so yellow!” and I replied “Yes, you like buses.”
Ugh. My intentions are nothing but good, but my underestimation of what she is
attempting to say has now led to a low level, simple reply. Even if she was
saying “I love buses!”, I could offer validation with “Wow, a bus! You love
buses! That bus was bright yellow like the sun, and it had so many wheels! I
wonder if we’ll see another bus today.” A response along those lines
acknowledges her enthusiasm and then models other ways that we can communicate
about buses, other things that we can think about when we see a bus.

The simple truth is that “Bus!” could mean a lot of things
from a 5 year old. A lot of things.
To name a few:

-that bus is yellow -that bus is big -that bus looks like my
bus

-that bus is not my school bus -is that my school bus? -I like that bus

-I
see a bus -do you see that bus -I liked riding the bus to school today

-something happened to me when I was on the bus today -I have a toy bus just like that
one,

-I want to play with my toy bus -I want to get on that bus

-look at the
wheels (or insert other part) on that bus

-that looks like the bus from (insert
book/movie/tv show) . . . etc.

The only way to know what Maya wants to say about the bus is
to provide her with a way (or multiple ways*) to say as many things as
possible. This is why I can’t help but cringe when parents (or others) say “We don’t really need to use AAC (communication boards, PECs,
devices, apps, whatever) at home because I know what he’s thinking” (or “I know
what he’s trying to say”). Maybe you do, or maybe you get the main idea, or
maybe you get it wrong but your kid doesn’t try to correct you (children with
limited communication abilities typically become passive communicators). Or
maybe your answer is distracting and “good enough” even if it isn’t correct
(eg: If your child comes home from school, points to the cabinet, and says “cookie”---thinking
about how the girl who sits next to him at school today had the exact cookies
that are in that cabinet---and you assume he wants a cookie and give him some
on a plate, what’s the obvious reply from your kid? To sit and eat the cookies.
You then are positive that he was requesting a cookie and you fulfilled his request,
and he is now eating cookies and has moved on from what he was thinking about
before.).

Guessing/assuming/inferring what a child is trying to say is
not a good long term solution. A vehicle needs to be provided that will allow
them to say diverse, novel things in multiple environments. We (the adults)
need to learn to ask “What about the __________?” and then wait. And wait. And wait. And then, if nothing comes, model different
statements that would all be appropriate.
Here’s an example:

Maya: Bus!

Me: What about the
bus?

Maya: (silence,
watching the bus drive down the street)

Maya: (silence)

Maya: (silence,
looking at me)

Me: What do you
want to say about the bus?

(more waiting)

Me (speaking and
tapping emphasized words on her talker): We could say that the bus was
yellow and big, that it was going fast, that you like that bus!

This shows her that there are many things to say about
buses, and that using the word “bus” isn’t enough to let me know what she’s
thinking. She needs to say more, and I expect that she can do it (even if she
can’t do it yet). It shows her other
words that would be useful in another situation like this. And it lets me insert
my guess of what she was thinking (“I like that bus”) but doesn’t limit her to
just that one sentence. It opens both of our minds, a little bit.

*We have tried many methods of communicating with Maya before settling in with her communication app, Speak for Yourself. Many of those methods are outlined here. This is definitely not a comprehensive list of AAC options, it's just the stuff that we've tried.